Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Mar 18, 2009.

  1. Shananegans

    Shananegans New Member

    What do you do when you can't sleep? How does everyone deal with the insomnia? Mine has been so bad lately and sleeping pills do not work for me at all. Just when I finally get my sleep schedule regulated again, I can't sleep. And then I end up napping and the vicious cycle starts all over again, nap during the day, can't sleep at night. Any suggestions?

  2. I used to have "bouts".... now it's "BOUT EVERY NIGHT!" (lol- sort of.)

    Since my PTSD (post-traumatic stress disorder) was triggered, and seems to get worse & worse... so too, does the insomnia- not so great, as it was bad enough due to pain- my doctor DID try to help, since she said "you're in a vicious cycle, and it is NOT good, for anyone- but especially with all your issues (I have more diagnosis' than I've years on this earth!)

    Anyhow- when I was on MSContin & MSIR, as well as Oxycontin + OxyIR, and also *Fentanyl patches*... I did not SLEEP!

    It was TERRIBLE on the MSContin & Oxy, I only slept in very VERY brief, *narcoleptic* episodes... I fell asleep smoking, A LOT. (definitely no good! working on quitting smoking right now, :)

    I'm on no regular meds for pain now, but, the pain clinic truly has tried nearly everything... demerol & methadone are about the only drugs/class I can think of we haven't tried, and probably won't... NOTHING works like it should on me, since having my gall bladder removed- it's insane. Medications, & dosages of medications, that would knock a 6' 5" MAN out, don't even make me the slightest bit *drowsy*!

    I was put on Ambien 10mgs, Ambien CR, and then Lunesta 3mgs, and they did not even make me *yawn!*

    My integrative doctor had put me on something before all the pain meds, called "sleep naturally".... and for a while, it worked fantastic..

    My sister (also has fibro, along with PTSD, bi-polar disorder, & other issues) and I both agree, that of all the things we've been put on for sleep--- MELATONIN works best-.....

    I'm actually going through some major frustration right now- as, suddenly- (???) even 15mgs will not work for me! (5mg pills, I'll take one, a cpl hrs later, take another, & so on)...

    I've studied melatonin on the net, you should too, if you've not tried it... it does not seem to really HAVE a 'maximum' dose... but, some sites state that 1mg in studies, had shown to be as effective as a higher dose (huh??? lol)

    It's recommended to take, I believe, half an hour before planned bedtime..

    I'm assuming that either my Vitamin D3, (newly started in January), or possibly my anti-convulsant med, may be causing this additional, *extreme* insomnia- but, I'm also, unfortunately very aware that my PTSD actually causes me to-- well, put in simplest of terms.... I believe my psyche basically fights my sleep just as little kids are known to do at certain ages!

    I know that when I sleep- IF I dream, 90% or more, of the dreams I remember, are not pleasant. With my PTSD having crept up on me in the past 2-3 yrs,

    I've always had nightmares, (never as gruesome, and horrible as when I went through anti-depressant drugs, just to please my STUPID doctors!)

    They now understand, that anti-depressants- ANY class of them, are truly physically harmful to me, some caused me permanent damage.

    Anyhow, GNC stores have several things to try for sleep, chamomille, St John's Wort (helped myself *and* my mother (has fibro also) not just with sleep, but, mild depression- but seemed to have a one-time only effect- it's never worked for either of us again..)

    Walmart has something called "calms forte" that worked for me, back when I was still healthy enough to work, as did other supplements, and other over the counter remedies wal-mart sells to help sleep.

    Some people here also try the newer OTC called "Sleep MD"... I've tried them all, from sominex, sleep MD, the natural stuff, to ambien, trazedone, lunesta..

    Melatonin has still worked the best of all things for me, and, I'm hoping to figure out why it isn't working for me right now- there's almost *surely* a newer cause for it, since for years, 2.5-5mgs has done the trick for me.

    When it does work like it always has, I would still wake up after a few hours, often, but, could sometimes fall back to sleep a little later *without* taking more, but, if I *did* need to, 1.25mgs, or 2.5mgs, would do the trick for me.

    Good luck, I hope this has helped?

    I know how you feel with the sleeping pills... I felt like some sort of FREAK, since, I have seen how sooo many people were sleeping- SOUNDLY, and for 6,7,8 or MORE hours! I felt really, really down, since, as I said- they did not even cause so much as a YAWN from me!

    I think it was due, though, in *part* to the pain meds I mentioned above... but, not fully- since, my sister was on about 4 different medications, that made her continuously *drowsy* & *groggy*... but she still never *slept* and so, when she too, was given some samples of ambien, and still didn't sleep- it sucked for both of us- but, I didn't feel so alone! lol..

    Like I said- if you haven't tried melatonin, though... Please do! It's been the most effective thing for me, (YAY! thank god, finally something that is the CHEAPEST, is the most effective!)

    Best of luck to you.

    You also might want to check your medications too, even if you've been on them a while,
  3. Shananegans

    Shananegans New Member

    Some great information! Thank you. I have considered melatonin but I'm just afraid it won't help and it will be more wasted money. I'm going to talk to my doc about it and see what she thinks. I just started Lyrica and we were hoping that would help, but I'm pretty sure it made it worse.

    Thanks again!
  4. Shananegans

    Shananegans New Member

    The "sleep when I can theory" is pretty much where I'm at right now. I cat nap. Sometimes for 30 minutes, sometimes for 4 hours. It comes and goes. Sometimes I can sleep for 8 hours, but never a full 8 hours. I wake up 3 or 4 times during the 8 hours and it's very rarely good, restful sleep.

    I'll look into the light-bulbs. Never heard of such a thing. At this point I'll try anything! I would love to be able to sleep when I want to instead of when I can.

    Thanks for your insight!
  5. Nanie46

    Nanie46 Moderator


    I am taking L-theanine 100 mg 3x/day, 5 HTP 100 mg 3x/day, Gabapentin 300 mg at 8pm and then I use 3 mg sublingual melatonin at 9 pm.

    It is helping, along with the fact that I am taking 3 antibiotics to address what I have found to be the cause of my FMS, a 21 yr. long Borrelia infection. Borrelia and Babesia infections, etc can cause insomnia, pain syndromes, fatigue, etc.

    One must be sure that melatonin and other supps/meds do not interact with other meds one takes, like SSRI antidepressants.
  6. heapsreal

    heapsreal New Member

    have have my insomnia cuaught in the corner, fro the moment.
    Melatonin everynight although it diesnt help me sleep directly it does help with sleep rythym abnormalities, reduces the amount of sleep during the day. I have 3 sleep protocols i dwop between.
    Doxepine 50mg- good soundd sleep, good for the weekend when nothing to do but sleep.
    then theres restavit ANTIHISTIMUNE COMBINED WITH LYRICA, GOOD QUALITY SLEEP WITH GOOD FUNCTION THENEXT DAY AND GOOD FOR PAIN TO,last is imovane with herbals like valerian, theanine, phenibut etc. Hoped this helps
  7. rockgor

    rockgor Well-Known Member

    What I do when I can't sleep is read or listen to music.

    I had insomnia even when I was a kid. For about 20 years, I never slept at night. Now, the last
    year of so, I've been sleeping 0-3 hours a night. I hate having appointments because I
    never know if I'll be awake.

    During the last year I've been taking bee pollen and Vitamin D3. I think these are responsible for
    the mild improvement. Bought some Fibrosleep from ProHealth. Just arrived. Haven't tried
    it yet. In fact, I can't find it!

    No sleep and brain fog is an annoying combination. Gets really teejus (as the old song says)
    after a few decades.

    Hope you can find something.

  8. Sophiaz

    Sophiaz New Member

    This was my first major symptom of my worsening CFS in 1989 and by 90 I was so tired, i had to stop working. Insomnia way out of hand. Long story short after many sleep studies done prior to my dysautonomia dx in 1998, i take Klonopin at night to help me sleep and sometimes melatonin. But waiting until bedtime to take melatonin does not do squat for many,

    Try it a couple hours before bed. get the plain kind, NO special long lasting release version. Try 3mg for a few can take two weeks to tweak your melatonin to get this to work and it did in my case..then try half a pill. Not good to take long term as this iS a HORMONE.

    Other things that go AGAINST "Sleep experts" who do NOT LIVE IN OUR BODIES!, I watch tv on a timer in bed. I do NOT watch drama or violent or intense movies. Ever. I do not watch the news (YIKES! read it online)

    Benign shows on DVD are great...I get them from library...Mary Tyler Moore, of the Bob Newhart show. I just finished ALL seven seasons of the Gilmore Girls the last few months. Sure I still have insomnia but you don't lie in bed with those racing thoughts of "Why can't I shut off my brain". if you have many issues including hyperandrenergic P.O.T.S. just moving or turning over in bed can set off adrenalin rushes.

    So TV DVD player in my room is the best thing since sliced bread. If you are married, sleep in separate room if this disturbs your partner. After all OUR REST IS VITAL and sleeping in separate room has nothing to do with your partner doing anything WRONG. it's just if insomniac or light sleeper anything can bother us!

    Hope this tip helps and I highly recommend starting with Season 1 of the Gilmore Girls...It's a delightful series and I cried when it ended. It has lots of snappy, witty, fast paced dialogue so I needed subtitles or close captioning to capture it all. And it has tons of baby boomer culture references!

    So good luck finding something to watch...comedies and light stuff are the best.

    Some sleep doctors get that THIS helps...others go "by the book" and FEW OF US fit in any neat box or book!!

    Best of luck to all

    [This Message was Edited on 03/19/2009]
  9. munch1958

    munch1958 Member

    I had it bad. To the point where I did a sleep study to prove that I didn't have sleep apnea. Once I underwent treatment for tick borne illnesses, specifically Malarone + Zithromax for Babesiosis, I no longer suffer from insomnia.
  10. hensue

    hensue New Member

    That is the only way i sleep i also have to have a sound like a dream machine or something constant to drown outside noises or they wake me. Poor husband sent him to another bed.
  11. Shananegans

    Shananegans New Member

    Thanks so much for the insight everyone. I had no idea I would get so many responses. Although I started to get a clue when I would see answers to my posts at 4 am. lol.

    Kind of makes me feel better to know I'm definitely not the only one. And apparently no where near the worst off. At least I can sleep sometime, even if it is inconvenient and during the day. Sorry to hear everyone's sleeping issues.

    wishing everyone the best!
  12. italiano

    italiano New Member

    you are not alone at all. I have it...every night. it's like an electrical shockwave when i try to dose off. have to take a sleeping pill or cannot cope or function. just simply are not alone...that's all i can say.